The Butterfly Rash

I've started noticing that I feel really hot sometimes--when embarrassed, and at random. I assumed I would just flush for no reason. But a few weeks ago I got upset about something, and my mom remarked that I was too red. (Getting red in response to emotion happens to me a lot.)

Finally, today in Spanish I had to answer a few questions. I wasn't confident, and could feel myself blushing again. When I got home, I was washing my hands and happened to look in the mirror. The traces of the blush were still there (several hours later).

Then I noticed the shape of the blush. I recognized the Butterfly Flush/Rash.


This rash is a clear symptom of Lupus. Now that I can see it, I've realized I've had it for a while--when I put on foundation, I often note the edges of it, which are the reddest.

So... looks like I have Lupus.

Tummy Doctor

(Sept. 2)

I saw the tummy doctor a few days ago and have more medicine to take. Apparently whatever autoimmune attack started my thyroid and Rheumatoid issues has effected my stomach region, and the doctor wants to check me out, make sure there wasn't permanent damage and whatnot. It's sort of interesting that I've told numerous doctors about my stomach problems, and my thyroid doctor was the first to actually recommend me to a tummy doctor, and now he's one of my regulars.

In Which I Add Another Doctor To the List

(August 18, 2008)

Today I saw Dr. C, my thyroid doctor. She was very sympathetic about my Saga Of Finding A Good Rheumatologist. While she was going through the checklist of things to ask me, I told her about my constant nausea in the mornings. (I quit trying to eat breakfast years and years ago, because it made me sick feeling and miserable. I can still manage to eat before eleven o'clock if I need to (i.e. at camp or before an important test) but most of the times that is Not A Good Idea.) I think I've told this to several of my doctors, but this time she stopped and frowned at me. I've now been recommended to see a tummy doctor next week. That's--what?--5 doctors now? Rheumatologist, heart doctor, thyroid doctor, normal doctor, eye doctor, tummy doctor. Six doctors! Score! Erm... or something.

Otherwise the appointment went fine, and everything seems to be okay from the thyroid point of view.

in which one side of my heart throws a party and the other side watches with disgust

(August 4)

I saw the heart doctor today. May I say it is amazing that they can look at a bunch of numbers and tell me right off what's going on? Apparently my heart monitor would alert the doctor even when I hadn't pressed anything, just if something weird was going on. So actually she did catch one of my palpations--just not one I felt.

Apparently my palpations are perfectly normal. What happens (as I understand it) is that the side of my heart which keeps the beat is on the top-left. However, from time to time the top-right of my heart decides to throw a party and speeds up, taking over the thump-thump. Then that side gets sick of the party and throws responsibility back on the other side. And life goes on. Nothing harmful or dangerous about it.

We also talked about my chest pains (which have gotten so bad at times that I've almost cried). When I have an "attack," it feels like my ribs are squeezing in and digging into my lungs very slowly. The worst it got was when it had been aching badly most of the day and I ran across the street. When I got to the other side, I couldn't breathe and was in a lot of pain. My doctor says this isn't related to my heart, though. She thinks it could be that I have Fibromyalgia or arthritis in my ribs, so that it hurts for my ribs to move when I breathe deeply. She thinks that the new medication I'm on will help.

She also told me some of the signs that I should be looking for, and encouraged me to call her if anything comes up.

So that's covered and over, for now at least.

A Fellow Named Fibromyalgia

(August 1)

Today I went to my old Rheumatologist. He will still see me, and goes as far to as to say he's willing to keep seeing me until I'm twenty one or something like that (we're going to switch to the adult one though). Why the other doctor can't do this, I don't know. Oh well.

Anyway. I was seen by a student doctor first, and I liked her much better than my last one. She was thorough, interested and listened to everything I had to say. We also joked a bit. It was much easier to say everything I wanted to when I wasn't being interrupted or stared at. She then got the main doctor, and he brought in a hoard of other student doctors to sit in on the rest of the appointment (which feels very awkward). It was sort of the same story as last time--he asked me a few questions and cut me off before I'd answered them completely. Oh well. My student doctor cut in once to correct him, which made me like her even more.

After talking for a few minutes, he had me stand up and started feeling different points on my neck, arms, legs and hips. These are pressure points, apparently, and some of them were very painful when he squeezed. The result of this test is that he has decided I have Fibromyalgia.

Fibromyalgia
Fibromyalgia, also called muscular rheumatism, is when you are in a constant state of pain, stiffness and aching. It is not a form of arthritis, and will not cause deformities or permanent crippling (thank goodness!). Some symptoms (the ones I have) are pain (particularly in trigger points), fatigue, Raynauds Phenomenon (the Dead Feet that I have), dizziness, tingling and numbness, and abdominal issues.

He has prescribed muscle relaxants to take in the evening, so I can sleep without my hip hurting. He also prescribed medication that should slow down the rate my antibodies attack/eat me. I've also been told that I need to start exercising for a half hour to two hours everyday, or my muscles might start to freeze up. It's as important to my body to exercise as it is for a diabetic to take insulin.

There is something else Rheumatoid-ish going on. While my doctor was rattling off about my only issues being thyroid (which really isn't that bad--mine's much less than my mom's or older sister's) and Fibromyalgia the nurse interrupted and reminded him about my high Rheumatoid factor. (Fibromyalgia isn't Rheumatoid, btw. It's pressure points...or something. It's confusing.) Anyway. So then he back tracked and prescribed some medicine I've been taking to help fight whatever Rheumatoid thing is going on.

Rheumatologist Saga

(July 16, 2008)

The new Rheumatoid doctor has apparently said he cannot see me. Since my eighteenth birthday is in three months, I am too close to being eighteen. However, the adult specialist won't see me because I'm still seventeen. The result is that, right now, I will probably have to wait until I am eighteen and whatever magically happens on that day happens. Which means in nine months I'll have only been able to be seen once by the doctor I most need to see. My parents are pretty frustrated, and intend to push for something when we get back. I'm rather resigned--I've waited this long that a couple more months of waiting doesn't seem awful, and I've stopped expecting to have a speedy diagnosis.

Endocrinologist and Heart Doctor

(June 27, 2008)

On Monday, I had an appointment with the endocrinologist. It went well--she's very nice and active. I have thyroid medicine now, which I have been taking. On Tuesday, I saw the heart doctor. She was really good too: attentive and helpful, and she explained everything. I have an Innocent Murmur in my heart, which means a murmur that's very quiet and not dangerous. We got to do an ultrasound of my heart (which was really cool) and I got hooked up to the Doc Oct machine (not do cool). Nothing seemed to be the matter. But just in case, she ordered me a heart-thingie that I'll be wearing as often as possible for the next month. That way if I have a palpitation or black out or something we'll have it on record. It's suppose to be coming today.

Cutting Corners

(June 2, 2008)

First: About four days ago we received the letter from my Rheumatoid Specialist. If anything, the letter proved he didn't look at me at all--he said my right hand was the one that had been hurting, though at the time it was only my left hand that was severe. He also referred to my bloodwork in 2004, when actually it was my bloodwork from this April. He didn't correctly catalogue how my feet turn purple--he said they turn color in the cold, but really it's any time when I am sitting down, i.e. not walking. We're not sure, by the letter, if he even looked at my X-Rays. However, he did discuss my blood results for the most recent tests. I don't have Sceroderma. He admits that my Raynaud's phenomena is probably related to an undetermined rheumatic disease (which is more than the nurse who called us said). He also thinks I may be in the early stages of Sjögren’s syndrome (I saw in the clinic today that people normally develop it between 25-40). He recommends I see an eye doctor, an endocrinologist (thyroid doctor, in my case) and come again in three or four months. (Sjögren’s can seriously damage the eyes through Dry Eye, which I've had for a while--this will also help determine what I have through special tests the eye doctor can do.)

Second: In an attempt to cut corners, my mom took me to one of Laura's diabetes check ups (with an endocrinologist). Her doctor (Dr. C, we'll say) will be mine for the thyroid problem, and my mom likes her a lot. I instantly liked her too, because as soon as Mom mentioned I was getting a referral and started explaining, Dr. C turned to her computer to pull up my records. She immediately put me in for an appointment at the next avaliable time (which isn't till the end of the month, because Dr. C is going out for the month of June ). So that's set up.

Today I went to the clinic again. My usual clinic doctor is out for the month, so I saw another doctor. We talked to him about the several referrals, including getting a new Rheumatoid doctor. He was very good--attentive and willing to listen to the questions and explain what he thought. Mom went through the list of questions we had made. I think there's only a couple things worth pointing out here.

A couple of times over the last month or so, I've had severe pain in my kidney area. It normally happens from eleven in the morning to about one o'clock. I'll be hungry, so I'll go to have cereal or something. (I usually don't eat in the morning because of stomach problems.) As soon as I look at the box and think about eating, I start to hurt. I don't eat, and try to walk around or stretch to stop the pain. Very quickly it becomes agony to walk around--but to sit is complete torture. I find the only semi-comfortable way to deal with is is to lie in a stretch position I learned in ballet three years ago, and read a book. (Movies/TV doesn't distract me enough.) It happens almost at random, and sometimes a couple of days at a time. I've noticed that when I am sitting or lying in bed, I can often feel a slight aching in the kidney area all the time. We mentioned this to the doctor, and I think (it's all sort of blurry now) that he said if something was seriously very wrong, we would be able to tell. And otherwise, it should show up in a small test. He had me do the test again (though I've done it every time I see a doctor over the past couple of months). So... We'll see if anything shows.

Also, a few days ago, something weird happened to my heart. I was in the car with Mom and Dad, going to have a meeting/talk at McDonald's (a fun occassion). My heart sort of throbbed very hard, skipped and then beat quickly and weakly for several minutes. It was one of those things that, when you're aware of it, you go, "Oh, you know, this has happened a lot before--and I bet it isn't something completely normal. I ought to mention it." I also remembered that before I gave up riding my bike, whenever I did I would have blackouts. I would suddenly feel lightheaded and nauseous, and my vision would be covered my blotches. Eventually everything would go black, if I didn't stop to rest. Normally I would stop and sit down (I couldn't stand) for a few minutes. I remember once than my dad helped me up and onto my bike again, and had to catch me because I nearly fell over. I always thought I was going to faint, but I never did. I gave up riding my bike almost completely after that time. This, too, I thought worth mentioning. So, I did. The doctor listened thoroughly to my heart for a few minutes, then sent in a nurse to do a test on me. She had me hooked up to this big octopus of a machine (I felt rather like Frankenstein or Doc Oct) and the machine recorded my heartbeats. (I forget what it's actually called.) Nothing showed up, but my mom says nothing normally does--my grandpa had a heart attack once and they didn't believe him because it didn't show up on the machine immediately. The doctor decided to refer me also to a heart doctor for some more tests and possibly an ultrasound (which would be ubber cool).

So now I have referrals to an eye doctor, an endocrinologist, a heart doctor, and a Rheumatoid Specialist.

Second Batch of Bloodwork

(May 23 2008)

A little over a week ago my specialist doctor called with blood results. He has determined that I have Hashimoto Thyroiditis, with possibly something Rheumatoid on the side, or so severely that it's causing Rheumatoid symptoms. If this turns out to be the case, it is a good thing. HT is pretty easily treatable (my mom and older sister both have it, I believe) though like most Autoimmune problems it isn't curable. It's also likely I've had it for seven years (my mom actually took me in to get it tested and the bloodwork didn't show anything). Anyway, it causes fatigue and stuff, which the medicine clears up nicely.

However. My smart mommy wrote down all the numbers/test names to research for herself. From what she can tell (granted, she's a homeschooling mother, not a doctor) it appears I even though do have HT, it looks more likely that it's a high Rheumatoid problem with that in hand, rather than the other way around.

Meanwhile, we've been waiting for the paperwork to come through so I can see the Pediatrician (Thyroid doctor). She also works with Laura, and Mom trusts her and likes her a lot more than my specialist. From there we're planning on making an appointment in my hometown, which is the other location a specialist is at. (Then again, at the rate things are going I'll probably be eighteen before my second appointment, and then I'll have to transfer to an adult specialist.) In order to get the ball rolling, Mom wanted to get together with my clinic doctor to get the referral. But my clinic doctor is going to be out the whole month of June and won't be able to see me before then. So I have an appointment with another doctor on the 2nd, where then I'll get my referral (hopefully!) and then see the Pediatrician and then maybe see my other specialist. (At least, this is my concept of The Plan--If the paper work comes in before the 2nd we'll probably just go straight to the Pediatrician.)

Meanwhile, I'm still taking pain medication to keep my hands in working order. Without them I would be in a ton of pain. (I'm in a little pain in the mornings even with the drugs.) So it's frustrating that this has gone on since February, and all the doctor stuff has gone on since April, and not much progress has been made.

First Appointment with My Rheumatologist

(May 2, 2008)

So. Today I had my first appointment with a specialist.

I woke up around seven and got on the computer until we left an hour later. We arrived around 10:00, and waited for about an hour or so. I flipped through college brochures I'd gotten in the mail and read some of Return of the King.

When we finally got in, I was seen by a student doctor. He was pretty attentive and examined me thoroughly. However, he was obviously a bit nervous, and he did not write down everything. (A small rash I have on my arms and legs, my stomach problems, etc.) He bent my fingers, but since it was noon everything but my thumb was in working order. (The pain is at its worst in the morning--sometimes it's a stiffness in the joints and not even very painful--and wears out by midday until it gets as severe as my thumb.) I don't think I made it clear enough to him that my thumb had begun hurting in the same ways two months ago, so he thought nothing of my other fingers and didn't think much of my thumb. He left to go talk to the big doctor and relay everything he'd found to him.

The Main Doctor I didn't like very much. He came in, poked around for a few minutes, and didn't seem to think there was anything terribly wrong. While that may be true, I felt like he ignored half my issues or didn't spend enough time to explain why certain things didn't matter. He thinks I have Sjögren’s Syndrome, but we don't know for sure. It was such a rushed interview, he left again before I'd had half the time I needed to collect my thoughts and ask questions. It wasn't until I saw their backs going out the door that I realized, 1) They did not try to bend my thumb at the middle joint (which is what hurts the most, and which I can no longer bend without having to manually force it--very painfully--with my other hand), so they were not aware of that pain, and 2) The Main Doctor thought that I had broken/injured my thumb somehow instead of thinking it was a gradual process.

Then I had to get a ton bloodwork done, and my chest and hand ex-rayed. Apparently I don't get called back for an update unless something is wrong. "No news is good news!" as the nurse said. However, I find this extremely vexing. It could be a wait as long as two weeks, and even longer for the Main Doctor's letter saying what is going on. Which means, unless something shows up in my bloodwork, I will not progress any nearer treatment--even of my hand if they decide it isn't worth worrying about. Or, if it takes two weeks and they decide there is a reason for me to go back, it'll probably take even longer for me to get another appointment, meaning more time waiting.

At least I've got new pain medication. My old one didn't do much of anything for me, and my doctor said it was really old and outdated. The new stuff is working much better.

I am hoping that whatever is wrong will show up in my bloodwork. However, a lot of the problems tend to not show up, so if the doctor is only concerned with bloodwork there's a chance that I will be overlooked. This is Not Good, and not something we're going to stand for. If that happens, the plan is that we'll get my clinic doctor (who is very nice) to give another referral and go to the other hospital, where hopefully I'll receive more attention. (I wouldn't mind going there anyway.)

So, I'm pretty frustrated.

The Bloodwork

(April 7, 2008)

Today we got most of the blood work back. I'm going to try to make this as easy to understand as possible...quite frankly I'm rather lost myself! I have a ton of windows and Google searches open, so as I read through those I'll probably comb through this and correct my mistakes.

We are almost positive that I have some form of rheumatoid arthritis.

What is rheumatoid, you ask? I'd like to know too!
Rheumatoid is apparently something "involving joints, soft tissues and allied conditions of connective tissues. In the term rheumatology, rheuma means 'that which flows as a river or stream' and 'ology' means the 'study of'".

This means more bloodwork and a specialist. Rheumatoid, according to this Wikipedia article, comes in many different packages. Fifteen different packages, to be exact. However, my doctor says I am most likely to have Sjögren’s Syndrome or something to do with Lupus or Scleroderma. (Since this time, Lupus and Scleroderma have been determined highly unlikely.)

Woah, wait. What the heck is Sjögren’s Syndrome?
Sjögren’s Syndrome attacks the moisture tissues such as tear and salivary glands. It can progress to the point of lunching on your liver and such, but I doubt that if I have this it is that serious.

Okay. Now. Speak very slowly: What is Lupus?
Lupus appears, among other variables, to like piggy-backing Sjögren’s Syndrome, ironically. Lupus is rather scary--it can cause kidney disease, depression, seizures, etc.etc. A lot of the symptoms sound familiar--arthritis-like pain in one or more joints, persistent fatigue; and hair loss.

Scleroderma sounds like throw up.
I know, I know. This is another scary one. One of the factors is Raynaud's phenomenon (or Syndrome), which we are certain I have. (More on Raynaud's Syndrome below.) It looks like I have a lot of these symptoms, too, but I'm not going to talk about them because it's a little frightening and somewhat gross. Besides which all this research is starting to make me very nervous, so I'm just going to skim the rest of it. Suffice to say that it's very possible I am at least in the early stages of this, and the worst that happens is I have heart/lung failure (among other things).

Raynaud's Syndrome
We are positive I have Raynaud's Syndrome. This is when your feet or hands turn cold, pale and blue in response to emotional uproar, heat or cold. I've had this for years. My feet are lovingly referred to as "dead people feet".

Along with all these possibilities is the chance of me having another autoimmune disease on top of it all. We're waiting for those results. (Hopefully they'll be in tomorrow.) Rheumatoid arthritis is an autoimmune disorder, by the way.

Autoimmune? Like, no electronics allowed?
Autoimmune diseases are when your immune system attacks and kills your own tissue, which means anything from tissue between the joints to your organs. Type 1 Diabetes (which my sister, Laura, has) is caused when your antibodies (the autoimmune released things that kill things) attack your pancreas.) Autoimmune diseases enjoy living with many people in my family.

Feeling educated? Feeling like your brain is going to explode? Me too!

The First Appointment

(April 4, 2008)

We got to the doctor's, checked in, etc.etc. My doctor was very nice. She came in and had a brief look at me, then went to wash her hands. "I had a chocolate chip cookie to get me started this morning, but I heated it up so the chocolate melted all over my hands," she explained merrily. Mom and I laughed. I had made a list of everything I could think of that was wrong, and a basic time-line of everything. (Yes, I am a planner, and I like to be organized.) This she found very helpful. She thought it was really funny that I put stinky feet on the list. And Laura had written in my schedule: "May 30 - My brain explodes because of LOST." The nurse was frowning at it and I quickly told her it was my sister playing a joke. She laughed and said something like, "Weird family." We talked about some other things, and she looked me over, and agreed that something isn't right. Then I was sent off to the lab.

Since I hadn't eaten any breakfast (tummy+breakfast=not good) I was ready for blood work. My dad was in the building, and he came to sit with us while we waited. (It was kind of funny, because all the little Navy folks were like, "*glance at him**double take**jump up* Oh! You can sit here, captain!" And he was like, "Uhhh, no, I'll just stand in this corner, thanks.") Finally the time came for me to come in.

When the nurse pulled out ten vials for my blood, I started getting a little nervous.

Because of all the things I could possibly have, they needed to take a lot of blood. It's not that it hurts, you know, it's just all in your head and your body sorta freaks out. I gripped Mom's hand and tried to breathe deeply. My dad made jokes and stuff to try and calm me down, but that wasn't very helpful because I'd laugh and jiggle the needle. Somehow I survived, though by the end my hand was asleep from lack of blood and I was feeling rather light headed. I almost hyperventilated at one point. I really, really don't like blood, suffice to say.

I got a glimpse of the ten tubs full of blood and then very wisely decided not to look again.